#021 - Fighting for Sight: ROP Awareness Week Special

Hello friends 👋

In this special double episode of Beyond the Beeps, we're marking ROP Awareness Week with a full look at Retinopathy of Prematurity — from the medical side to the deeply human side. First, Dr. Faizah Bhatti walks us through what ROP is, its causes, risk factors, stages, and treatment options, while emphasizing why parental advocacy and regular follow-ups are so critical for premature infants. Then, Leah MG Jayanetti sits down with Tyronza Williams, who shares her emotional journey through the NICU with her daughter Alicia, born at just 23 weeks. Tyronza opens up about Alicia's ROP diagnosis, the treatments she underwent, and what it truly means to advocate for your child when everything feels uncertain. Together, these conversations capture both the science and the resilience behind one of the most common challenges facing premature babies.

https://urldefense.com/v3/__https://preventblindness.org/retinopathy-of-prematurity-[…]b5P733BclIRyfkgbkGgTWBdZOZuwjLz0ra6sipAOCovwchdGZLGg6MeEQgRA$

Link to episode on youtube: https://youtu.be/4OZl-1L3l2I

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The transcript of today's episode can be found below 👇

[00:01] Leah MG Jayanetti: Hello everyone, it is Retinopathy of Prematurity Awareness Week and we have a very special episode today. You'll hear from our parent guest, Tyronza, a little bit later. But first I have a special guest, Dr. Faizah Bhatti. Welcome, Dr. Bhatti.

[00:02] Dr. Faizah Bhatti: Hi, thank you so much for having me.

[00:23] Leah MG Jayanetti: Thank you. Share with us a little bit about what brings you here.

[00:33] Dr. Faizah Bhatti: I'm a neonatologist, pediatric trained. My background is pediatrics and I have fellowship training in neonatology. I take care of babies in the NICU here at Oklahoma Children's Hospital. We are affiliated with the University of Oklahoma and are the primary referral academic level four neonatal intensive care unit for the state of Oklahoma.

I have a passion for eye disease. I work very closely with our pediatric ophthalmologists and my academic and research focus is on retinopathy. We have a research program where we study the basic mechanisms of the disease — how it develops, how blood vessels grow, and what causes them to not grow normally. We also look at how to improve the care for babies with eye disease, and we partner with other centers and institutions around the country, participating in multi-center studies and clinical trials. So yeah, that's what I do.

[01:59] Leah MG Jayanetti: Wonderful. So Dr. Bhatti will be with us throughout this episode, popping in and out and providing some medical information to everybody listening. Okay, so our first question is — what is Retinopathy of Prematurity?

[02:00] Dr. Faizah Bhatti: Yes, so as we know, babies who are born early experience a lack of development in every organ in their body, depending on how early they are born. Some organs, as they develop, rely on a good blood supply. The blood vessels that supply the retina — which is the very back of the eye — are one example. If we think about the eye, we can see the front where the colored part is, which is the iris, and the center, which is the pupil. The pupil is what allows light to travel back to the retina.

The job of the retina is to take all of those light signals and convert them into electrical signals, which then get translated by our brain. And it can only do that if it has a good blood supply. Now, let's say a baby is born at 23 or 24 weeks. At that point, the retina surface has almost no blood vessels on it. Blood vessels don't develop completely until about nine months of complete pregnancy — it's only at that point that they fully cover the surface of the retina. So the earlier a baby is born, the less coverage there is, and the parts of the retina that are supposed to develop to allow normal function won't have developed yet.

The problem is that when a baby is born early, the disease occurs in two stages. The first stage is that the blood vessels stop developing. That's because the oxygen a baby receives in the outside world is much higher than what they were getting in the uterus, and that higher oxygen level actually signals the blood vessels to stop growing. The factors that allow blood vessels to grow just stop.

But then in the second stage, after several weeks of the baby being in an incubator — maybe getting oxygen, maybe on ventilator support — the blood vessels start growing again, but unfortunately in a very abnormal way. Instead of growing in the normal pattern to cover the back of the eye, they start forming little webs and tangles. I call them little spider webs, but the clinical term is neovascular tufts — and that's the term parents will likely hear in the NICU.

These spider webs start to grow on the surface of the retina, and if they go unchecked, they can start to grow into the center of the eye — into the vitreous, which is the jelly-like substance between the front and back of the eye. If those blood vessels continue to grow, they can actually start to pull the retina away from the back of the eye. In its most severe form — which thankfully we don't see as much anymore — this can lead to a full retinal detachment. Depending on where that's happening on the eye, the risk to vision differs.

[05:34] Leah MG Jayanetti: So you mentioned 23 or 24 weeks. What puts a baby at risk of developing Retinopathy of Prematurity?

[05:35] Dr. Faizah Bhatti: That's a good question. The two main risk factors are how early a baby is born and how low their birth weight is. Those have always been considered the classic risk factors for ROP. Babies born at 23 or 24 weeks — most will have some form of ROP, though it's usually mild.

However, the things that increase the risk of more severe disease include needing higher amounts of oxygen for longer periods of time, and having more frequent drops in oxygen levels — the desaturations. Any parent who's spent time at the bedside knows that alarm going off on the monitor when the oxygen saturation starts dropping.

[06:28] Leah MG Jayanetti: All the time.

[06:31] Dr. Faizah Bhatti: The more desaturations a baby has, the longer they last, and the more oxygen they need, the greater the risk. If a baby also has multiple bouts of infection, sepsis, or NEC (Necrotizing Enterocolitis) — the gut disease — all of those stressors can stack up cumulatively and increase not only the risk of developing ROP, but also the risk of it progressing to more severe disease.

[07:04] Leah MG Jayanetti: Knowing that a lot of our premature babies battle these things, what's the incidence rate of developing the disease? How many of our babies are really going to see this?

[07:04] Dr. Faizah Bhatti: It depends on gestational age, but in general, it's somewhere between 45 to 70 percent, depending on the study and patient population. We are a level four center and a referral center, so babies who need treatment generally get referred to us, meaning we tend to see higher rates — closer to the 60 to 65 percent range. However, thankfully only about 3 to 5 percent of babies will develop disease severe enough to need treatment. Most babies who get ROP will see it resolve on its own. That doesn't mean they're completely in the clear, but the most severe form of disease thankfully affects only a small number of those babies.

[09:15] Leah MG Jayanetti: We'll hear from Tyronza about her daughter Alicia having the most severe type of ROP a little later. But you mentioned earlier that there are different forms of it. Can you tell us about the different stages?

[09:16] Dr. Faizah Bhatti: Yes, and I think this is one of the most important things for parents to understand. When we look at the kind of disease a baby has, there are two things we assess.

The first is the location of those neovascular tufts. There's a part of the retina called the macula, which is the most sensitive area — that's where the rods and cones are the most dense, and it's responsible for converting those light signals. The closer the disease is to the macula, the greater the risk of vision loss. So location matters a lot.

We divide location into zones. Zone one is closest to the center of the eye. Zone two is a circle around that. Zone three is the outer periphery of the retina. The closer the disease is to zone one, the more significant it is.

The second thing we look at is staging — essentially, how big is the tuft? Stage one is a very small tuft that barely forms a bump on the surface. Stage two is bigger, visible in three dimensions. Stage three is a sizable tuft where you may start to see blood vessels growing off the surface. Stage four is where those blood vessels are now growing into the center of the eye. And stage five is unfortunately where detachment has occurred.

There's also a third term parents might hear — plus disease, or no plus disease. Plus disease refers to blood vessels that don't have tufts but still don't look normal — they may appear dilated, engorged, or tortuous, meaning they have more of a zigzag pattern. The presence of plus disease, especially in zone one, indicates a more significant degree of disease. So parents are going to hear zone, stage, and then plus, pre-plus, or no plus. Those are the terms we use to define the degree of the disease.

[12:50] Leah MG Jayanetti: Okay, lots to think about. Once a baby has started their process — what does the process of evaluating and monitoring babies for ROP look like?

[12:54] Dr. Faizah Bhatti: Yes, so the American Academy of Pediatrics and the American Academy of Ophthalmology have put out very comprehensive guidelines that direct both neonatologists and pediatric ophthalmologists on when to start exams for babies, and that depends on how early a baby is born. In general, the first eye exam is going to be somewhere around four weeks after a baby is born. So if they're born at 24 weeks, it'll be at about 30 weeks. We don't do it earlier than that because you unfortunately can't get a good look into the back of the eye — there's too much haziness.

Another term parents might hear is immaturity. When they hear that the zone is immature, that simply means there's no ROP, but the blood vessels have not yet reached full development — they haven't reached the outer rim of the retina. So we're monitoring not only whether disease is occurring, but whether the blood vessels are growing out to that outer periphery. Eye exams will happen every one to two weeks depending on how mature the retina is, or if the ophthalmologist sees some disease and wants to keep a closer eye on it, they may happen more frequently.

[14:53] Leah MG Jayanetti: Once the evaluation process has started and it's determined that a baby needs treatment, what do those treatments look like?

[14:53] Dr. Faizah Bhatti: We've come a long way in terms of treatment options. Thankfully, complete detachments are now fairly rare and don't happen as commonly. Some centers don't see them at all anymore. They do still happen though, unfortunately, and if they do, surgical treatment is required to try to keep the retina from completely detaching. The risk of visual loss in those cases is still pretty high.

For stages of disease that are not that severe, we have two primary options. The first is the gold standard, which is laser treatment. A laser is delivered — either in the NICU or in the operating room depending on the center — and it basically addresses the tuft, trying to burn it and keep it from growing any bigger or further. The ophthalmologist will treat all of the areas that either have the disease or are at risk of getting it.

The second treatment is medication delivered directly into the eye. These medications target the growth factors that cause blood vessels to form abnormally. They are a form of antibody that targets what's called VEGF (Vascular Endothelial Growth Factor) — so parents might hear the term anti-VEGF treatment. That medication is given as an injection directly into the eye, under sedation and anesthesia, using a very tiny needle inserted into the side of the eye.

Some babies may need that treatment once, a few may need it more than once, and some may need laser first and then injection, or the other way around. It really depends on where the disease is, how severe it is, and the overall condition of the baby.

[17:44] Leah MG Jayanetti: For a lot of people, the eyes are a squeamish spot. I've seen many parents who have a high level of tolerance for what happens to their baby still have to step away during eye procedures — because it's relatively invasive, especially on your little baby.

[18:10] Leah MG Jayanetti: You mentioned anesthesia and sedation for both procedures. Does the baby feel anything or experience any residual pain after?

[18:10] Dr. Faizah Bhatti: That's a great question, and something we're really striving to understand better. What we know is we never want any baby in the NICU to suffer. We do not want any procedure causing undue stress or pain.

To do an eye exam, an instrument has to be placed to keep the eyelids separated, and then the ophthalmologist uses numbing drops directly on the surface of the eye, followed by drops to dilate the pupil so they can get a good view. Some centers use cameras to do the exam rather than direct viewing — but either way, all babies get those numbing drops and the dilation medication.

We really try not to sedate our babies too heavily and we never like to intubate them for these procedures. We've gotten much better at supportive care during exams — feeding the baby beforehand, swaddling them well, giving sugar drops during the procedure, and sometimes a dose of anti-anxiety medicine to take the edge off. We really try to keep the baby as comfortable as possible, especially because if disease is present and we need to monitor more frequently, exams may need to happen once a week or even more often.

[20:41] Leah MG Jayanetti: Knowing that there's a lot to understand and keep track of with ROP, which seems to affect so many of our babies — what do you feel parents should be advocating for when it comes to their baby's care?

[20:42] Dr. Faizah Bhatti: We want our parents to be partners. We highly encourage parents to be at the bedside, especially during rounds. When I'm doing rounds, I will talk about all the systems that are relevant at that time, and talking about the eye exams is very important. If you know an eye exam is coming up, or if you know one has happened and it's not mentioned on rounds — please ask. Ask what the findings were, what the plan is, and when the next exam will be.

Understanding the staging and the zones is not intuitive or easy. When I'm at the bedside, I usually try to draw a picture for parents, and our pediatric ophthalmologists will typically do the same. I also think it's important for parents to ask the right questions even before eye disease has occurred — questions about what we're doing to try to prevent it. Things like: do we still need to be on oxygen? What's the plan for coming off the ventilator? What's the plan for weaning off CPAP? These questions prompt important daily thinking about minimizing risk.

But where parents play the most important role is in making sure that as discharge approaches, their baby is scheduled for post-discharge ophthalmology follow-up. I know that when a baby goes home with a lot of complex needs — neurology, pulmonology, surgical follow-up — the eye appointments can fall to the back burner, especially if the ROP was mild. But we're now understanding that even milder forms of disease can increase the risk of vision problems as these children reach school age, and even into adulthood. The risk of adult eye diseases like diabetic retinopathy or macular degeneration may be greater for these individuals.

So parents need to be strong advocates for making sure regular eye screenings continue, that teachers and physicians know their child was in the NICU and had ROP, and that any needed follow-ups happen in a timely way.

[25:34] Leah MG Jayanetti: That's really helpful. What about a baby who had some lower stages of ROP but then it resolved?

[25:49] Dr. Faizah Bhatti: That's actually one of my strong research questions right now. What we believe is that any abnormal development of blood vessels in the eye — even if it goes away — likely leaves some form of scar tissue. So while we may not see those big tufts develop, and while the disease may not reach the point of needing treatment, those scar points can still create tension in the way the eye cup develops. These babies may develop strabismus, amblyopia, myopia, or a decrease in vision earlier than another baby might.

And as they reach young adulthood, we're starting to ask whether their retinas might thin earlier, and whether they carry a greater risk of adult eye diseases down the line. So regular ophthalmology follow-up is key and critical — even for babies who had mild ROP that never required treatment. Stay relatively vigilant and see if anything changes over time.

[27:51] Leah MG Jayanetti: Since it is Retinopathy of Prematurity Awareness Week and you are very active in research — what's on the horizon for families to look forward to in terms of new research and treatments?

[27:51] Dr. Faizah Bhatti: Great question. A few areas are really exciting right now.

First, we know that the highest risk is in babies born at 30 weeks or less, and that's where all the current guidelines focus. But we also know that even babies born after 30 weeks carry some risk of ROP — and we're trying to understand that population better to make sure those babies don't get missed in screening.

Second, we're working to standardize guidelines for sedation and comfort care during eye exams and treatments. You asked whether babies feel pain — that's something we're actively trying to address through better standardized protocols.

Third — and I think this is the most exciting — we're focused on earlier prevention. Can we identify sooner which babies are going to develop ROP? We're looking at genetic factors and other early predictive markers, right from the time a baby is born at 23 or 24 weeks, so that we can develop more personalized medicine and care for those at higher risk. And you're going to see more medication-based treatment options emerging beyond just laser.

It's a very exciting time for this field. There are passionate investigators doing phenomenal work on the preventative side, the therapeutic side, and in understanding the disease better. I think parents have a lot to look forward to.

[31:28] Leah MG Jayanetti: That's wonderful — really comprehensive improvements on the horizon. Dr. Bhatti, thank you so much for your time. For everybody listening, please take this information back to your baby's doctor and ask some great questions. Thank you so much.

[31:37] Dr. Faizah Bhatti: Thank you. And one last plug — I would highly encourage everyone to check out the Prevent Blindness website. Prevent Blindness is a national organization developing educational resources for both care providers and parents. They have great videos on their website in both English and Spanish covering the disease, treatment options, and how to better screen and follow these babies after discharge. They're a wonderful resource. Please check them out.

[32:53] Leah MG Jayanetti: Thank you so much, Dr. Bhatti.

[32:57] Dr. Faizah Bhatti: You're welcome. Thank you for having me.

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[32:59] Leah MG Jayanetti: To talk about her experience in the NICU and with Retinopathy of Prematurity, I am here with Tyronza Williams — a wife, mother, and high-level insurance professional who brings both lived experience and practical perspective to conversations about navigating the NICU. She's the founder of Feel Your Feelings, an emotional wellness platform focused on helping parents acknowledge and process the complex emotions that arise during medically stressful experiences. Through her work, she encourages emotional honesty, self-compassion, and resilience while families care for their infants. She is also the creator of Storytime with Ty, a children's storytelling YouTube channel designed to offer moments of calm and connection during hospital stays.

She was a very hardworking mama of two when her third daughter, Alicia, was born at just 23 weeks. A 23-weeker's experience is long and each baby's course is unique. For Alicia, everything was further complicated when she needed highly specialized care for her eyes — about five hours across the state, in a completely different hospital system. I'll leave it here and let Tyronza tell her story. Tyronza Williams, welcome to Beyond the Beeps.

[34:48] Tyronza Williams: Thank you so much, Leah. I appreciate the opportunity. So Alicia — she was born at 23 weeks and six days, weighing in at 380 grams, which is equivalent to 13.4 ounces. That's right, not even a pound. We experienced severe preeclampsia but we made it through. They got us to the hospital. The goal was to keep her in as long as possible. We made it three days — went in on a Friday and she was born that Monday, November 11th. Special date.

[35:25] From there, before she was even born, the doctors were letting us know what the road could look like for a 23-weeker. Some even encouraged us to consider comfort care and let her pass. But my husband and I decided, no — we're going to let her fight. She had already fought and won against birth control, and so we were going to let her do her thing and show us what she could do. She experienced an eight-month-long NICU stay. We were at Johns Hopkins for five months and then we were moved down to Miami for the last three months — and two months of that stay in Miami was strictly for her eyes.

It was a Thursday afternoon in April when the ophthalmologist called and said, "Mrs. Williams, I'm sorry, but Alicia's retina has detached." This was coming after she had already had two rounds of Avastin injections to the eye. Within a few days, they told us we were going to Miami. We were loaded up and on our way. That Tuesday after we arrived, Bascom Palmer's team came in, checked her, and confirmed it was a partial detachment. She would have to have a vitrectomy. She had two vitrectomies and they both failed.

[37:03] So right now she's back to square one with a partial detachment in her left eye. Bascom Palmer was very realistic with us, saying their goal was to make sure her right eye was in the best shape possible — and they've done that. She's had a few rounds of laser and a few rounds of Avastin injections. She's now wearing glasses but is still being seen by Bascom Palmer to make sure the ROP is at bay. Most recently it flared back up and we were back in Miami. On December 9th she had to have another surgery — some laser to the right eye. Her last visit was January 2nd and they told us there's still a little bit there, but they were going to give her an opportunity to allow her body to resolve the rest of those blood vessels. So we'll follow up in March to see what's going on.

[38:10] Leah MG Jayanetti: Let's back up for everybody who's listening. The path of a 23-weeker is rocky. As you mentioned, the doctors suggested comfort care, but you and your husband decided she was here, she was fighting, and you were going to fight with her and follow her lead. What was her respiratory journey like? She started on a ventilator, I'm sure. Do you remember much about how much oxygen she was receiving?

[38:55] Tyronza Williams: Absolutely. Ventilator — vent, vent. One day we went in and she was on the oscillator. There are three different vents and she was on all three at different points. They tried to wean her to one that mimicked more realistic breaths versus the shallow vibrating oscillator, but she didn't respond well and they had to quickly switch her back. She was on the oscillator for a while, and then they were able to wean her — but she needed nitric oxide to get down to the next lower level vent. To get completely off the vent, she had to do steroids. She did a two-week course and was able to come off. She was on the vent for about two months total.

[40:27] From there she went on CPAP and stayed there for some time, and then they tried to wean her to high flow — but they felt she couldn't do it. So she had a bronchoscopy to check her airways. There was a little mild floppiness, but nothing of concern. The team said, you just have to make her do it. But the opportunity never came at Johns Hopkins because in that process, her eye situation happened and we were sent to Miami.

[41:23] Leah MG Jayanetti: Let's talk about that. When do you remember them first looking for ROP?

[41:37] Tyronza Williams: 37 weeks. And I remember being that proactive parent, always asking — when can she wear clothes, when are we going to do this exam? So those numbers stuck with me. Around 36 weeks I was asking, "Hey, Alicia is going to be 37 weeks — is she on the list for the eye exam?" They didn't see her on the list, but they made sure she got on it. When she finally did get checked, she already had stage one, zone two. The following week they didn't even let her go a full week without being checked — it kind of stayed at bay. And then the next time, it was like, no, she's progressed to stage three. That was her first time having Avastin injections in both eyes. The ophthalmologist told us it may or may not work, and that laser might be in her future. All of those things ended up being in her future.

[42:37] Leah MG Jayanetti: So the diagnosis began gestationally at 37 weeks and it just kept progressing — going the wrong way. How long was it before they said we need to escalate the care and send you to Miami?

[43:14] Tyronza Williams: It was a Wednesday or Thursday when the ophthalmologist came in and said the retina had detached. He said he had to call around to find who could accept her, because there aren't many pediatric retina specialists in the United States. He told us Miami would be his first option. If not Miami, Atlanta and Emory. If not Atlanta, then up north. Thankfully, Miami was able to get us in.

She still needed NICU care — she was still on CPAP, still on an NJ tube, with all the wires. Miami's NICU at Holtz accepted her, and Bascom Palmer's retina specialist, Dr. Berrocal, said yes as well. From finding out on Thursday to leaving that Sunday — three days.

[44:43] That waiting period was incredibly difficult. There was so much uncertainty. What even is ROP? They only tell you so much about it because they don't expect the worst to happen — they don't expect the retina to actually detach. Even the ophthalmologist himself said, "I don't know how this happened." When he sees her in the office now, he still says, "I just don't know, I was surprised." Even some of the nurses in the NICU would come down and say, "We've never had that happen — can you tell us what they told you?"

[45:29] Leah MG Jayanetti: What did they tell you?

[45:29] Tyronza Williams: Pretty much that her retina had partially detached, and if it wasn't treated immediately, she could go blind. It was a matter of urgency. And what made it even more alarming was that the professionals themselves were clueless. Together, this was our sixth child — none of them had ever been in the NICU. And then from one extreme to the next: she's stage four ROP, no one knows how she got there, no one can fix it, and now it's a waiting game to see who will accept her both as an eye patient and as a NICU patient. Meanwhile our minds are already spinning from everything else, and we have two other children at home. My husband and I had been married seven years and we had never been separated like that. I had never been away from my girls. There was just so much happening at once.

[47:07] Leah MG Jayanetti: And from where you are near Johns Hopkins to Holtz in Miami — on a good day with relatively little traffic, you're talking about five hours. That's not a round trip.

[47:18] Tyronza Williams: Right, and hospital to hospital — because we live a little over an hour from Johns Hopkins. So Johns Hopkins to Holtz's front door is three and a half to four hours on a good day with no traffic.

[47:43] Leah MG Jayanetti: So you had a couple of days — which feels like too much and not enough time — to prepare to leave home, leave your girls, leave your husband. You had to live in different places. Because somebody had to stay home with the girls and you had to go with Alicia. What was that conversation like?

[48:05] Tyronza Williams: You know, Leah, it wasn't difficult in terms of the decision — my husband knew that me not going was not an option. Our baby was going, I was going. It was already hard just leaving her in St. Pete to come home for the day. There were many days where I was physically home with my girls, but my heart and my mind were at the NICU all the time. Sometimes I would just jump up and say, "I'm going to see the baby," and my husband had to slow me down. The conversation wasn't really about whether one of us would go — it was about who. And he said, "You go, because you've been at the bedside."

[49:33] I tell a lot of people that NICU babies are kind of like walking theses or dissertations. Someone, if not both parents, has to be versed in everything going on. And if I didn't fully believe that before going to Miami, Miami confirmed it. Not because of anything the hospitals did wrong — it's just the nature of the beast when a baby transfers from one system to another. Jackson Memorial has their own app. Johns Hopkins has MyChart. They don't speak to each other. And her documents hadn't even gone ahead of her.

[50:36] There were times where I stayed at my baby's bedside for a full month without going anywhere — just upstairs to shower and brush my teeth, downstairs to get something to eat. I was living at her bedside. During rounds, some doctors would ask me, "Mrs. Williams, what happened and where are we at?" because they hadn't received her records yet. If I could verbally fill them in, that gave them a head start. I had no option but to be there.

[51:22] Leah MG Jayanetti: I love that — she's a thesis, she's a dissertation, and you had to defend it. You were the one who could translate it, stand up for it, give it voice. And I think about those days sleeping in a chair at Holtz, which is an open bay unit with no private rooms. What were those first few days like when you arrived?

[52:56] Tyronza Williams: Initially, it was rough. Coming from a private room facility at Johns Hopkins was an adjustment in itself. The staff at Hopkins already had a little rapport with me and my husband because they had come to our room before Alicia was even born to walk us through what things might look like. When we first arrived at Holtz, I was walking to the back and the nurse manager said, "Mrs. Williams, I need you to wait in the family room while we do her assessments." And I just felt that rip from mother and baby all over again. But I understood, and I went quietly.

[54:04] When they finally let me go to her area, I saw her in an incubator. We had left Johns Hopkins with her in a crib. And when I saw that incubator, something was triggered — PTSD, as my therapist would later tell me. I was thinking, why is she in this? She wasn't in this when we came. I know now it had nothing to do with Alicia — it did something to me. I saw that incubator and my mind projected all the pumps and medicines and wires from those earliest days, even though none of that was actually there. That's what I felt.

The nurse was very sweet about it. She explained that when a transfer comes in they assume the worst — assume the baby can't hold her temperature — and that's why they use the incubator until they know her history. I said I understood, but I told her my baby had been in an open crib. And the next morning, her nurse switched her out. I was really grateful for it. It was those little things — that's where the advocating began. That was just the tip of the iceberg.

[56:59] Leah MG Jayanetti: It's really about communication, isn't it? The hospitals not communicating to each other. There are so many opportunities for hospitals to do better around transfers — rounding together virtually before the baby moves, including the parent in the onboarding at the new NICU. We wouldn't separate a four-year-old from her parents if we didn't have to, so why do that to a baby?

[57:23] Tyronza Williams: Absolutely.

[57:27] Leah MG Jayanetti: So she had already had several types of treatment — Avastin injections, laser, and the vitrectomy. That surgery is very, very rare. You went to one of the only places in the country that could do it. What was that experience like?

[57:56] Tyronza Williams: We were hopeful. We weren't happy about it, but we were grateful it was an option. We hated that it was her reality. She had already gone through so many hurdles in the NICU, and just when we felt like we were turning a corner — here came the vitrectomy, the biggest of the biggest. They were very honest with us: it may or may not work.

I dared not Google what a vitrectomy actually involves. The retina is at the very back of the eye — I didn't want to know what they had to do to get there. She wasn't even six or seven pounds and she was going through something of that magnitude, for a chance — not a guarantee.

[1:00:48] That first surgery, she was back there five to six hours. It was very daunting — just the two of us in Miami. I made friends in the pod and would walk up and down the hospital courtyard until I got the call saying she was done and everything went as expected, and now we wait.

[1:01:08] After the vitrectomy, she had two positions she could be in — on her right side or face down. The only option for her was her right side, because tummy time wouldn't work. I believe they put oil in the eye to help the retina reattach, and gravity was supposed to push it down. She was fighting it the whole time, of course, rolling around as much as she could.

It was looking good for about three weeks. And then Dr. Hua from Bascom Palmer came in with her team and said, "Mom, it's starting to lift again." They told us they couldn't go back into the eye right away — it needed time to heal first. They gave her about five weeks and then scheduled a second surgery. She was back in the OR about three hours that second time. I had even asked the eye nurse, Annie, how many times she had seen a surgery like this need to be repeated before it was successful. She told me she remembered a baby from Puerto Rico who needed it three times. So I prepared myself mentally — it might take three times. Okay.

[1:05:11] Second time, in and out. Same positioning on her right side. But no more than two or three weeks later, they came back and said, "Mom, it's lifting again." I felt like I had been hit by a Mack truck. And this time they told us — our goal now is to make sure her right eye is fine. We are not going back into the left eye.

[1:05:25] I was devastated. Two and a half months in Miami, and the left eye still had a partial detachment. We were told that could lead to blindness. And then I had to call my husband at home with the girls and deliver that news. It was bandaid after bandaid being ripped off. They calmly said if we wanted to go back home, we could. And all the blocks just came down. I cried. Her nurse Nancy, who had been acting as her primary the whole time we were there, just let me break down. I said, "I'm done." Done with what? I couldn't tell you — because I was far from done. But I needed that moment.

[1:07:35] I left the hospital, went back to the Ronald McDonald House, and got ready for Bible study with the church I grew up in back home. At a certain point, what's the use of directing that energy somewhere negative? Feel your feelings — yes. Identify them, feel them, work through them, and don't let them consume you.

[1:08:05] And I had to keep reminding myself — her story could be so much worse. Regardless of the eyes, just being a 23-weeker in the NICU, it could be much worse. A new day came, and that reminder came with it.

[1:09:53] Leah MG Jayanetti: You are an extraordinary person — your energy, your presence, your being. What do you attribute that to?

[1:09:57] Tyronza Williams: Definitely faith. Life happens, and I've made up my mind that everything truly happens for a reason. We can cry about it and stay in the "woe is me," or we can take whatever we need from that obstacle and keep moving. I choose the latter — not only for myself, but for my children who look up to me. Let's pick up the pieces, leave behind what doesn't serve us, and keep moving forward.

[1:10:55] Leah MG Jayanetti: That's the foundation of Feel Your Feelings — feel it, take what you need, leave what you don't, and keep it moving.

[1:11:05] Tyronza Williams: Absolutely. And don't let your feelings consume you. I'll be honest — specifically in the NICU journey, those first few weeks, I was numb. Emotionally, mentally, physically — I was a walking shell. I knew I had to go to that NICU, and I went. But there was a moment where I wanted to go no contact with everyone. People knew I was pregnant but didn't know what had happened, so there were all these conversations I felt I had to have, and I just didn't have the energy for them.

[1:12:29] I felt like it would be better to just stay in that dark place by myself. And then God literally sent my dad. He called me and said, "Don't go silent. Don't go dark." And it was so ironic — I hadn't even told my husband I was feeling that way. Once I started opening up and telling people what was going on, just being honest even when I didn't have answers — things shifted.

[1:13:34] I took notes every day in that NICU. I was looking back at them a few weeks ago — I have 173 pages of notes from Johns Hopkins alone and eight pages from Miami. And you can tell exactly where there was a click between "woe is me" and "let's get to work." You can see it in the notes. Barely anything — and then suddenly a lot of questions, a lot of notes from rounds. Because in St. Pete we were always at her rounds. Even when I had to go back to work, they knew mom was calling twice a day and needed a full report.

[1:14:20] Leah MG Jayanetti: After your dad called, what did you actually do to reach up and out of that dark place?

[1:14:29] Tyronza Williams: I responded. I had so many people reaching out to me — my closest friends — and I can look back and see I was ignoring them. One day I decided to respond. And I tried to respond with a small lie — told one of them I'd just been busy. She called me out. She said, "No, you're not. You're feeling a way, and I know it, and I understand why." That gave me permission to be vulnerable. In my circles, I'm usually the strong one, the one people come to for advice. So it was new territory for me to need that support myself.

[1:15:58] And that's really where Feel Your Feelings came from. I had a coaching mindset long before I formalized it — I literally had a dream about it three years ago, bought the LLC, and went from there. But the pull toward it grew even stronger during the NICU stay. My friend calling me out gave me the courage to say: everything is not okay, I'm not strong in this moment. But here I am. And I'm going to feel how I feel, take the pieces I need, and keep moving forward.

[1:17:27] Leah MG Jayanetti: When she called you out, you let her in — you let her. You stayed open even though it was painful. That is deep, deep love and courage. What does life look like now for you, Alicia, your husband, and the girls?

[1:17:50] Tyronza Williams: It's definitely a different kind of busy. The NICU is emotionally busy, but being home is busy in its own way. For Alicia, she has occupational therapy, physical therapy, developmental therapy, feeding therapy, and vision therapy — on top of all her doctor's appointments, and on top of our other children. But we wouldn't trade it.

She's making great progress and she is very stubborn — and her developmental therapist loves it. She's still working on rolling both ways, because being positioned on her right side for so long has affected her development. Her therapist will try to guide her to roll the other way and Alicia just lies there like — I'm not doing it. But at the end of the session, she always does it, just to prove she can. And her therapist loves that, because cognitively she knows she can do it — she just doesn't want to. Especially knowing she also had bilateral intraventricular hemorrhages — IVH — a grade one on one side and a grade three or four on the other side, that kind of awareness and stubbornness is actually a really positive sign.

[1:19:47] She's no longer on oxygen — she came home on it, but she's off it now. We're playing the waiting game with her eyes. She wears glasses. She also had BPD (Bronchopulmonary Dysplasia), so she still does breathing treatments, but that's really minor at this point — we know she'll grow out of it. It's been a joy.

[1:20:17] Leah MG Jayanetti: Tyronza, we do a couple of things at the end of all of our chats. We're building a virtual NICU knapsack — what's one thing you would make sure every new NICU parent has in theirs?

[1:20:28] Tyronza Williams: A journal. And if it's not an actual journal, notes on your phone — something. Make sure you have the ability to write down how you're feeling, how baby was doing that day, and any information discussed in rounds, whether you were there or not. The babies are walking dissertations, and how can you defend your dissertation if you don't remember what last week was like? Doctors rotate, and you may have one say we're going to do A, B, C, D, when the one last week said X, Y, Z. That's when you say, "Hold on — doctor so-and-so said last week we had this plan, and I'd like to proceed with that if possible." The journal gives you that. No malice behind it — it's just documentation so you can advocate for your baby. Journal for sure.

[1:21:37] Leah MG Jayanetti: You're the constant. You don't rotate. Nurses change every 12 hours, doctors rotate through. You provide the continuity — and that sounds like it was truly life-saving. Do you have any other words of wisdom for a family who might be at the bedside right now?

[1:21:59] Tyronza Williams: Be present. Not only for the dissertation piece, but to bond with your baby. So many parents have to grieve what their pregnancy was supposed to be, what they imagined it would look like — and sometimes we can stay so caught in that grief that we forget to just be present. You can still love on your baby no matter where they are in the NICU process. If they're 380 grams and you can't hold them just yet, still be there. Talk to your baby, read to your baby, sing to your baby. Make that connection. Clock in to where you're at now, because your baby needs you.

[1:22:45] Leah MG Jayanetti: Beautiful. And the last question — what does hope mean to you?

[1:22:52] Tyronza Williams: Hope is knowing that there's a possibility for improvement. And for me, if I looked in the dictionary, Alicia's face would be right there next to the word hope. Given where she came from, what she's overcome, and what she's doing now — she is, for sure, hope.

[1:23:17] Leah MG Jayanetti: Yeah. She's extraordinary. Just like her mama. And her dad.

[1:23:21] Tyronza Williams: Thank you. He has held it down so much. He is truly the backbone of our family through all of this. It's been difficult, for sure.

[1:23:38] Leah MG Jayanetti: You make a great team. I really appreciate you both being able to show up for each other in different ways, for the girls, for your community, and for the other families in the NICU — including all of us here at ICU Baby. We're so grateful to know you, and I'm so glad you were here to share about your journey with Alicia. Thank you so much, Tyronza.

[1:23:59] Tyronza Williams: Thank you so much, Leah, for having me.

[1:24:05] Leah MG Jayanetti: So if you're out there — maybe sitting by your baby's bedside, driving in and out of the NICU, pacing the floor at night, sitting by a breast pump — whatever it looks like for you to be in the NICU right now — Tyronza and I want you to know that you are not alone. Take gentle care.

[1:24:17] Tyronza Williams: Take care.